Most POCs have setting numbers. Settings do not equate to liters per minute. Please don’t assume setting 3 is equal to 3 liters a minute from a tank or plug in concentrator. HAST test is a good idea. .

Diagnosed with “pneumonia” Nov. 2021. First time at urgent care. I thought it odd that I had no symptoms other than shortness of breath upon exertion. Two courses of antibiotics; no improvement. Went to emergency dept. of local hospital after follow up at urgent care, where my primary care MD asked me to go. Urgent care said I needed hospital.…

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Yes, thank you, Larry for drug interactions. It’s hard for me to believe that with all the publicity about lung harm from both vaping and smoking, people still believe it’s benign or even helpful. As for the comment about one’s doctor not recommending something that could help you because of their desire to aid pharma profits…if I were…

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I’ve been on it since Jan. 2022. Greatly reduced inflammation in my lungs. Totally agree about the two year prognosis likely being bullshit. I was told my PF was progressive when first diagnosed by emergency doc. It hasn’t been. Several of the PFT functions are better thanks to mycophenolate and weight loss. What kind of a doc are you seeing?…

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Sleeping on your back is worst for any sleep apnea/snoring issues.

It can’t hurt but it’s unlikely to do anything for your overnight blood oxygen saturation. You may need a sleep study, at least overnight oximetry test, and possibly a home study for sleep apnea as well. Many of us desaturate during sleep and don’t know it. Don’t fall for people telling you to just check pulse oximetry as soon as you wake up.…

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My husband used to work in clinical research for this company, which is privately owned by a German family. He worked in cardiac, not pulmonary, drugs. This drug sounds promising. It should be noted it is for IPF patients, not those whose PF has an identifiable cause, such as my autoimmune disease. Mine is Sjogren’s Syndrome, but other…

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FVC is a component of PFT and a relatively small change from one to the next is usually not cause for concern. It’s the trend over time. ILD or not, EVERYONE loses lung capacity as we age. Also PFTs are a snapshot of one day, and many factors can affect performance on one PFT. Good wishes.

You may have heard of Noah Greenspan of the Cardiopulmonary Wellness Center in NYC. He is always saying breathing is multifactorial. PFTs provide a good snapshot, and are good for tracking trends over time. But any given PFT can be on a “good” day and another, on a “bad” day. So worry about the trend over time. As another poster said, xray is…

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Pre-arrange for wheelchair transport from and to all gates and leaving airport. I had a HAST test (high altitude simulation) which showed I don’t need oxygen at normal pressurization of planes, equivalent to being at 6 to 8000 feet above sea level. That’s if stationary, sitting. If you use oxygen overnight, pre-arrange with your oxygen supplier…

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Mycophenolate reduces inflammation and prevents new inflammation from forming. Ofev is to slow the progression of fibrosis. If inflammation remains unchecked, Ofev has a harder job. Please take your meds and make sure you use oxygen as needed.

Be careful of thinking the settings, 1-6. on the Inogen G5 are liters per minute. They’re not. Setting 6 is about 1.26 liters/min. My six minute walk scores improved when I bagged the G5 and went to a tank where liters per minute are actually that. This is true of many POCs.

I’ve taken mycophenolate since late January 2022, 1000 mg twice a day. Dramatic reduction of inflammation, improvement of PFT scores. No drug, of course, will reverse any scarring already present, and I still have all of that.

I just read an article in JAMA (Journal of the American Medical Association) about ILD, and this was one aspect covered. Generally, perfenidone and nitedanib are used for IPF and mycophenolate mofetil more likely to be used (and effective) in ILD caused by connective tissue diseases. It has worked for me, Sjogren’s Syndrome being my CTD cause of ILD.

IPF does NOT include fibrosis with a known cause, such as an autoimmune disease. I think Covid-induced worsening of fibrosis is just one example of an infection worsening existing PF. It also doesn’t seem right to call Covid-induced PF “I”PF, because it isn’t idiopathic. Covid caused it. However, there could be people who had undiagnosed…

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I don’t have this. Is he checking his temp with a thermometer? (Not just assuming he has one because his forehead is warm or he feels warm with activity.) If he is running a fever, does he have other symptoms of illness? Might be good to talk to his doctor.

That is the gold standard for clinical trials: randomized, double-blind, meaning neither you nor the people giving/making the drug know who gets what until it’s over. It’s done this way to avoid bias.

In a recent talk by a respiratory therapist, sponsored by PF Warriors, I believe, he stated in takes at least 45 seconds to get an accurate reading from fingertip pulse oximeters. After I heard that I had a medical appointment and complimented the tech on waiting before taking the reading.  If a forehead-sensor pulse oximeter is used, it may… Read more

Just want to mention there are some drugs that may relieve SOME symptoms without heavy side effects. In my case, mycophenolate resolved a lot of inflammation, along with nebulizer and later, Symbicort through an Aerochamber. I don’t have IPF; I have ILD caused by Sjogren’s Syndrome (an autoimmune condition).

I became very short of breath heading across a parking lot into a store. A couple days later, I was diagnosed with pneumonia in an urgent care clinic. I thought it was weird I had no symptoms other than SOB because I thought pneumonia involved more than just that. A few days later, no better, I went to my primary care doc and got another… Read more

ECMO stands for Extra-Corporeal Membrane Oxygenation. Extra-Corporeal means “outside the body”. It oxygenates the blood outside of the body, then returns it.  Whereas ventilation puts oxygen into the lungs and relies on oxygen transfering into the blood.

Inogen has one and I actually received two when I bought my G5.

First thing that comes to mind is whether you really have “I”PF. Many who have PF, scarring in lungs, actually have a cause for it if sufficient diagnostic testing is done. PFTs and walk tests can vary. It’s the trend over time that matters most. One of the most important, FVC (forced vital capacity) is improved generally by losing weight, if… Read more

Thank you, Dr. Strum, good info. And thanks to everyone participating on this thread. Of course, if there are nodules in the lungs that seem suspicious, one may have to have CTs more often.

Please don’t assume your O2 saturation during sleep is ok. There is an overnight test to see how low you drop, how often you drop below 90 and how long each event lasts. Even if you take a pulse ox reading right away upon waking up, it does not mean you are ok during sleep. A few breaths upon awakening brings the number up. And it may be… Read more

Thank you, Dr. Strum. I’m glad I was on track.

He may be trying to assess how much, if any, your fibrosis progresses in six months. That’s something that could be valid initially, but HRCTs are not routinely done at specific time intervals indefinitely. It is pretty routine to have PFTs and walk tests every six months, maybe more often in some cases. CTs and HRCTs are noninvasive, but… Read more

It’s hard to see what good a biopsy would do at this point. There seems to be ample evidence that you need a lung transplant, if you are eligible and want to do it. Would this surgeon be the one doing the transplant? I rather hope not, because I’m deeply wary of doctors suggesting lung biopsy (or any other risky, invasive diagnostic… Read more

SOB does not always correlate well with oxygen saturation, although for me, it usually does. Millie, regarding the pool, I don’t swim, more do water aerobics type exercises, sometimes using the noodle for certain things. I once brought a hand towel and my oximeter poolside to check quickly as I worked out. Is it posssible you are climbing up… Read more

I have been diagnosed with asthma and have heard nothing about Symbicort being a problem for it. In fact, a quick Google shows it is used for asthma. Ask the doc.

https://www.mysymbicort.com/asthma.html

 

I have been diagnosed with asthma and have heard nothing about Symbicort being a problem for it.

You  guys: seriously? Exercises to heal scar tissue? I think if this were a thing, we would have heard about it. Also, anyone who’s seriously listened to the talk about zinc knows it does not claim zinc heals scar tissue and that research is very preliminary-not yet in humans.

As for the link, it’s on the website. You will find what I said is true.

I am wondering if you had a thorough work up before your IPF diagnosis. Sometimes “I” PF is not the true diagnosis, in that sometimes PF has a cause and is not “idiopathic”. Specifically, some autoimmune diseases, like rheumatoid arthritis, and the Sjogren’s Syndrome that I have, can cause pulmonary fibrosis. Certainly both of those conditions… Read more

High resolution, or any CT scan does expose one to radiation, so I would ask the doc if one is suggested more often than every six months. I was just told last April’s does not need to be repeated for this year. As for diet and exercise reducing fibrosis, there is no scientific data supporting that. Was there another medication? In my… Read more

My understanding is that almost every person with lung disease should get all the Covid boosters, unless there is some contraindication, like severe previous reaction. MRNA does its thing to the immune system and then leaves the body.

It sounds as if you’ve done fairly well so far. Kudos to the doc for ordering a high res CT right away, not…

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Unless it’s something like a hair clip, I try not to trust products in which their data is written in such a way as to need a good proof-reader. I also find good proof-reading is valuable in protecting oneself from online scams of all kinds: errors in spelling, grammar, syntax and punctuation do not speak well for the product advertised.  I… Read more

I live in the Olympia, WA area and see a local pulmonologist here for PFTs, six minute walk tests and follow up appointments. I also go to the ILD Center at OHSU in Portland, OR, a two hour drive. (Since I am unable to drive at night, this time of year, I keep Google on speed dial for sunrise and sunset times in this northern latitude for… Read more

I can do pool exercise without oxygen.  More water aerobics type workout than swimming per se, but go for over a half hour at a time.  I am not fully dependent on oxygen, but it helps.  Currently doing Noah Greenspan’s PR video program and at about the time the walk exceeded 7 minutes, I decided I needed some oxygen while walking.  One thing… Read more

My mother had some type of PF and she also had allergic bronchopulmonary aspergillosis.  I’m told it’s likely she had PF and the aspergillosis was an opportunistic fungal infection.  I had a ton of bloodwork done and was found to have ILD/PF as a result of Sjogren’s Syndrome.  I believe my mother may have had that too.  She had several… Read more

It is your right to talk when you’re ready. I know people mean well, but the notion of “getting well” doesn’t apply to so many diseases. It is hard when you’re first diagnosed.

We had gotten kittens about a month and a half before I was diagnosed.  I was glad for them, and yes, we have plans for who will take them when we can’t care for them.

 

I also take alendronate and have since before diagnosis, no problems before or since.  I take mycophenolate and Symbicort (much happier with this than nebulizers).  I have lost weight, but it’s been deliberate, via lower carb eating, trying to keep it to around 100 g. a day.  I’ve noticed on the Facebook pages that many seem to have been… Read more